Milan's CHD Journey

Mobirise
Milan was born on 05.01.2023 weighing 3.64kg and 53cm, he was a big boy, but within our first few minutes after meeting him, his pediatrician told us he will be taken to NICU as he had trouble breathing. He was on CIPAP machine until mid day 06.01.2023 and was discharged to go home one 07.01.2023 with the news that he has a VSD, which sounds small. I will never forget the doctor telling us that the harder the murmur, the smaller the hole normally. So he was not too worried. We had a 2 week check up, and the doctor said the murmur still sounded the same, so we would schedule for an echo when he is a bit bigger/older. During this time, his breathing became heavier, and at 4 weeks, he developed an ear infection. Back to the doctor we went. But this time, the doctor was not happy with the weight gain and his breathing. He was only gaining a maximum of 10g a day, which was way below average. You could clearly see and hear his breathing was abnormal, so our cardiologist visit was booked for the next day.

We met with Dr. Andrag the Wednesday, and Milan had his first echo and ecg. His VSD measured 8mm, and he was diagnosed with pulmonary hypertension; this also explained his breathing difficulty at birth. The doctor was not too worried, but she wanted to be careful, so we started on anti-failure medication; Spiractin and Lasix. We also met with a dietician who advised FM85 that I would have to give in my breastmilk to help him build up strength and weight to drink. Turns out his breathing was so severe that he would use all of his energy just to breathe instead of to grow.

We struggled with the supplements. By 6 weeks old, he started to lose weight. There was no improvement in his breathing or weight gain even on the anti-failure and supplements. At 7 weeks old, Dr. Andrag gave us the news that he is going into heart failure and would need his heart surgery ASAP. That Monday morning, we were told that Milan would be admitted into Christiaan Barnard Hospital, and his operation would take place that Thursday morning.

The day came when we went into hospital. We met Dr Hugo Hamman, who did his echo and confirmed the VSD to be 8mm.

We met Dr Vosloo, his surgeon who kept us calm, explained the procedure, and answered all our questions. Day of the surgery... Thursday 02.03.2023

8 weeks old

Dr Bosman, his anesthesiologist, came to fetch him at 07:15 that morning. We held our breaths the entire time, just waiting for them to come and call us. Our nerves were finished. Our minds are completely lost, and our hearts urge for cuddles from our little boy.



At 11:30, his PICU nurse came to call us to notify us that he is out of surgery and they are setting him up in PICU.

I don't think we ever dreaded walking in somewhere like we did that morning. My heart broke into pieces when I saw my little boy, barely 8 weeks old, pipes and cables everywhere, laying with a ventilator and being completely sedated. Dr. Vosloo came in and explained what had happened during surgery. And it all started making sense.

Once she opened him up, Milan's VSD measured to be 15mm. They also spotted a PDA, which both cardiologists missed because the VSD was so big. BUT the doctor fixed him. They sutured the membrane to close the VSD, and they added a clip to close the PDA. Our boy's operation was a success, and now he just had to heal.

He was kept on the ventilator and completed sedation until Monday morning (06.03.2023) as the doctor did not want to take chances after closing the enormous VSD.

We, as parents, stared out to the Harbor on floor 9 just watching the ships come in and out day after day, waiting for them to wake him up. While sitting there, all you hear are the machines beeping and notifying the staff when his blood pressure would spike every 3 hours.

His pipes became less by the day, and they started taking away medication slowly but surely. By day 13, we had a happy cooing boy again. No one would believe that he just had open heart surgery 2 weeks ago.


We were all too happy when we got the go-ahead to take him home. We could hold and cuddle him again, giving kisses on the cheecks and just staring at him.

And now here we are today. 6 Weeks post op, 3 months old, and our son is healing so nicely. All medication and supplements had stopped. I am back to breastfeeding, and Milan is picking up weight as he should... 30 to 40g a day just on breastmilk alone. He is doing tummy time, rolling over and laughing out of his stomach at his silly sister, and we could not have been any happier. We now have regular checkups with Dr. Andrag just keeps an eye on his PDA and then to make sure his septum starts to work properly and his breathing returns to normal. All these small things are going to take time... I mean, a 15mm hole in the heart, the size of a walnut is enormous.

But we will make it. We take it day by day, step by step, and surely we will reach the day where he has healed 100%

We are so excited and can't wait until that day. This mommy, daddy and sister is so proud of what Milan has accomplished and we are so grateful for all the staff at Louis Leipoldt as well as Christiaan Barnard. Dr. Paul Keating - his Peadiatrician at Louis leipoldt. Dr. Liesel Andrag - his cardiologist at Louis leipoldt. Dorothy vd Spuy - his dietician at Louis leipoldt. Dr. Hugo Hamman - his pediatric cardiologist at Christaan Barnard. Dr. Susan Vosloo - his surgeon at Christiaan Barnard. Amanda & Lara - his dieticians at Christiaan Barnard.





We have so much and so many people to be grateful/thankful for. All the prayer groups that went around, all the encouraging messages we received, and most of all, our support we received from our family and friends.
We are looking forward to a happy, healthy life with Milan.


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